“Creation of a Visual Encyclopedia Illustrating the Terms and Definitions of The International Paediatric and Congenital Cardiac Code, a system of nomenclature developed by The International Society for Nomenclature of Paediatric and CHD

Doctor's Name: 
Jeffrey Phillip Jacobs, MD, FACS, FACC, FCCP
Hospital/Institution: 
The Congenital Heart Institute of Florida

Tremendous progress has been made in the field of pediatric heart disease over the last 30 years.  Pediatric heart problems that in the past were untreatable and lethal are now treated routinely with great success.  Overall, 96% of children who undergo pediatric heart surgery survive and go home.  Although survival after heart surgery on children has improved dramatically, complications after heart surgery still occur.  These complications are sometimes quite harmful to these children.

 

Efforts to decrease these complications often require collaboration involving many hospitals.  In order for these hospitals to be able to work together, they must speak the same language when talking about pediatric heart disease.  A universal language has been developed for pediatric and congenital heart disease, and named the International Pediatric and Congenital Cardiac Code (IPCCC).  In order to make the IPCCC more universally understood, efforts are underway to link the IPCCC to pictures and videos.

 

The Archiving Working Group is a not for profit, volunteer organization composed of leaders within the international pediatric cardiac medical community.  The Archiving Working Group is part of the International Society for Nomenclature of Pediatric and Congenital Heart Disease (www.ipccc.net). Its purpose is to illustrate, with representative images of all types and formats, the pertinent aspects of cardiac diseases that affect neonates, infants, children, and adults with congenital heart disease, utilizing the IPCCC, and definitions associated with the IPCCC, as a backbone.  The Archiving Working Group certifies and links images and videos to the appropriate term and definition in the IPCCC.  These images and videos are then displayed in an electronic format on the Internet.

 

The product of this Grant will be the creation of a web-based visual encyclopedia illustrating the terms and definitions of The International Paediatric and Congenital Cardiac Code, the system of nomenclature developed by The International Society for Nomenclature of Paediatric and Congenital Heart Disease.  The web-site will be free to access and will increase the universal understanding and utilization of the IPCCC.  This project will therefore create tools that will support future research in multiple domains.  Multi-institutional collaboration can lead to advances in patient care, research, teaching, and even service (by providing health care to those in developing nations).  All of these domains of multi-institutional collaboration are based on the foundation of a common language or nomenclature.  The IPCCC is a universal nomenclature of pediatric and congenital heart disease.  By linking the IPCCC to pictures and videos, and making these linked images and videos universally available, this project will make the IPCCC more accessible and universal.  Thus, this project has far reaching and important significance.

 

This website of images and videos will also give The Children’s Heart Foundation considerable exposure in the academic and clinical communities of professionals caring for patients with congenital heart disease because The Children’s Heart Foundation logo will be prominently displayed on the Home Page of the Website to acknowledge the support of The Children’s Heart Foundation in the completion of this project.  Furthermore, a hyperlink will be provided to connect from the AWG Web Portal to the web site of The Children’s Heart Foundation.

 

The Archiving Working Group of the International Society for Nomenclature of Pediatric and Congenital Heart Disease is hopeful that with this effort, we will promote the concept and ultimately the adoption the IPCCC as a universal international system for nomenclature to describe the various aspects of cardiac diseases and malformations that affect neonates, infants, children, and adults with congenital heart disease.

Award Date 1: 
2010
Award Amount 1: 
$50,000
Award Date 2: 
2011
Award Amount 2: 
$50,000